Ch-ch-ch-ch-Changes

Ch-ch-ch-ch-Changes (Turn and face the strange)
Turn and face the strain
Ch-ch-Changes
Don’t have to be a richer man
Ch-ch-ch-ch-Changes
Ch-ch-Changes (Turn and face the strange)
Don’t want to be a better man
Time may change me
But I can’t trace time

I watch the ripples change their size
But never leave the stream
Of warm impermanence and
So the days float through my eyes
But the days still seem the same

From David Bowie “Changes”

Turn and face the strange, turn and face the strain, Ch-ch-ch-ch-Changes. That has been my life with ALS and the life of everyone with ALS. It is a progressive neurodegenerative disease meaning that it will progress, although everyone’s rate of progression is different.

I am so inspired by new online friends from around the world with ALS who I have met through social media. They are facing the strain and strange and Ch-ch-ch-ch-Changes and still put on a happy face for the world to see.

Like my friend Lana in Amman, Jordan who writes a blog as loofyonline. She wrote about wheelchair inaccessibility in her country that makes it really hard for her to leave the house – no sidewalks, no wheelchair accessible public restrooms, no elevators big enough for a wheelchair. It takes an incredible amount of planning to go anywhere. Her words:

So when I finally do find somewhere that ticks all the boxes and you see me out and about, I always have the biggest smile on my face. A smile that shines to deflect the looks of pity and the negativity. A smile that overcomes my inability to speak and says loud and clear “I am okay! I am so happy and I am out of the house!”

And my friend Eryn in Orange County, California who wrote an essay for ALS Worldwide. Her words:

Today, I struggle with mundane daily tasks such as getting dressed and brushing my hair. I now have to ask for help to get off of the floor after playing with my children and I struggle to help them get dressed or change a diaper. Often I have found myself waiting in line behind my children to get help dressing for the day. I can’t express how hard it is to stand there half naked and realize that in many ways I am as helpless as a 3-year-old.

As a mother I have been put on the bench so to speak, as I have been reduced to observe more than interact with my beautiful children. ALS affects me every minute of every day. I can’t run away from it even when I sleep. It affects me moving in bed, needing help to walk, and every morning I have to fight to get up. I struggle lifting my arm to wave goodbye or to say hello. How am I supposed to raise my children and be a good wife if I’m not able to be there for them? My life and independence has been stolen from me.

Nonetheless, I get up every morning for my family. I fight every day to stay strong and to get the most out every day. I strive to stay happy and to appreciate every kind word, every kind deed, and to quite literally smell the roses. I get up every day to represent all those who can no longer stand, to be the voice for those who no longer have one, and to remind myself there is more than myself affected by this devastating disease. I can only hope that my contributions can help promote awareness and some day we can stop and prevent this now more than ever indiscriminate disease from stealing the lives of ourselves and loved ones.

Appreciate every moment.

This week I had some challenges appreciating every moment. Last weekend my feeding tube cap failed.

I was worried that if I pulled it out again it would break off and I wouldn’t be able to close my tube. I was lucky to marry an engineer because Stan is very good at making things work. We devised a system where I would kink the tube, and wrap it with a colorful hair tie (figured that out after losing three brown rubber bands), then use pliers to pop the cap off the tube. This worked for 5 days and then we got a Lopez valve from the infusion company.

This seemed to work well but there were two drawbacks. It is much bulkier under my clothes and we noticed that formula was getting stuck in the red med port and there was no easy way to clean it out. Engineer Stan used a combination of q-tip cotton and plastic wrap to make a seal that hopefully would keep liquid out. This worked for less than 24 hours. Then my hero engineer went out to his lathe in the garage and made me a cap for the tube. I will still have to kink it to stop the flow but it is even less bulky than what I started out with.

All three cap systems in one photo. My favorite one is my new black one made by my true love engineer!

This week I also learned that it was too good to be true that I could always throw up through my tube. I caught the nasty gastrointestinal sickness that is spreading like wildfire among students and staff at my work. My first barf Friday morning was through my tube and I thought no problem I got this. Later that morning I had tried to throw up through my tube but it came up through my throat too. My throat muscles don’t work as part of the peristaltic pump esophagus anymore, so I end up with acidic stomach juices stuck around my vocal chords. Very small sips of gatorade with my chin to my chest to swallow helped clear the first one. I was starting to feel better and we were packing up to leave for the weekend when an explosive projectile vomit took me by surprise. Luckily I was holding some cloth napkins and I made it to the sink without too much mess. We cancelled our weekend trip. Later that evening I threw up through my throat again and this time my throat was burning and I couldn’t talk at all. It took a few sessions with my cough assist machine to get me to expel (throw up) the stuff that was stuck in there. It wasn’t pleasant but I love my cough assist machine!

So I have learned twice now that medical issues are a bigger deal when you have ALS – when it took me a long time to recover from surgery and when I caught the gastrointestinal bug that was going around.

But I am strong and I am inspired by strong and amazing women and men with ALS who are focusing on the positive and finding reasons to smile even with this devastating disease.

I watch the ripples change their size
But never leave the stream
Of warm impermanence and
So the days float through my eyes
But the days still seem the same

The ripples in my life have sometimes been tsunami sized (death of loved ones, premature baby, husband’s illnesses, ALS diagnosis) but it’s true that no matter how big they become they are still part of the warm impermanence of my life. And no matter what this disease does to my body, I am still Meg inside, and am lucky to be able to communicate online and with voice to text on my phone and iPad. My iPad program allows me to use different voices and I set one up for Spanish. My son is taking high school Spanish and I am able to quiz him even though I can’t talk, and he reads to me in Spanish. And my wonderful husband continues to be a huge support despite being in a lot of pain himself. These things make me smile through all the Ch-ch-ch-ch-Changes.

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